Men and women

This past week I was speaking to one of the classes I teach about the way people with disabilities are percieved, often negatively, by those around them. This is in spite of the fact that they think they are doing fine. Their only experience is their life experience and as far as they are concerned they are ok. I thinking through that, I came up with a metaphor, which might be helpful to some people in terms of understanding the point I was trying to make.

Now, I am a man. I was born a boy, and have grown up male. All I know is what it is like to be a male. Of course I love people of the opposite gender. I first loved my mother, then loved my wife and for the last 19 years have loved my daughter. I love those women, but I have no idea of what it is like to be a woman. I have no idea of what it is like to be three of the closest people to me in my life. I have some ideas of what it might be like to have me as a son, or as a husband or as a father, but I really don't know. Women tell me what they are thinking sometimes, but I really don't know what it is like to be one. Obviously, they don't know what it is like to be a man either. My mother, wife and daughter only know my thoughts to the extent to which I share them with them, and I have been told by them at times that I don't understand (ostensibly their women's perspective). I am sure that that is the truth.

However, imagine that I decided that because women are not men, their lives are in some way diminished, disabled. They think they are just fine as women, however, I think I know better. I therefore impose my beliefs on them. I think I know what it would be like to be a woman, and if I were a woman, I would be upset that I am not a man. I convince them that they have a poor quality of life, or get them to believe that their physical womanness is an impairment of which they should be ashamed. Perhaps I conclude that their differentness from me is not a difference, it is an impairment to which discrimination is attached (some of you may argue that this actually occurs, and I would be hard pressed to disagree). But to continue to press this metaphor, instead of me as a man seeing women as part of the natural diversity of humanity, as my equal yet in some ways different from me, imagine that I see them as "other," as very different from me. Not only that, imagine that I think they are dissatisfied with their lives as females and that they would choose death over being a woman, so deep is their wish they could be a male like me.

Can you catch where I am going with this metaphor? I think there is a lot overlap with the way in which people with impairments are percieved, particularly those with disabilities that they are born with. I only know what it is like to have my level of cognitive ability. So I assume those with a lower cognitive ability level would wish to be me. I only know what it is like to have my other characteristics, good vision, healthy, etc. And because I am satisfied with my life having my characteristics, I assume that those who don't have my characteristics are dissatisfied with their lives. That because they are not me, that they are in some way suffering, or depressed, or something else negative in character.

You might say that this sounds foolish, however, this perception drives the movement to prenatally diagnose and abort babies with disabilities. Take down syndrome for instance. We are told by the medical profession that obviously, people with down syndrome suffer, are dissatisfied with their lives because they don't have normal intelligence, or other characteristics that we (people without down syndrome) have. At least that is what people think who are behind the prenatal diagnosis and abortion movement. They take the lives of infants with down syndrome out of "compassion" for what the persons with disabilities are not.

But just as certainly as I don't know what it is like to be a woman and a woman doesn't know what it is like to be a man, I dont' know what it is like to be a person born with down syndrome. All I do know about that life experience is what they tell me about that experience. And what do they tell me? They tell me that they are happy with their lives. Many would say that they don't think they even have a disability (something they perceive negatively, probably through their socialization). Yet I believe my daughter when she says she is happy (even though I don't know what it is like to be a woman) but I don't believe the person with down syndrome when he or she tells me she is happy because I say that I would not want to live with that disability if I had it.

In the same way that I don't know what it is like to be a woman, I don't know what it is like to be a person with a disability. In the same way that a woman does not know what is like to be a man, a woman without a disability does not know what it is like to be a person with a disability.

May God forgive our society for projecting its negative perceptions on people with disabilities and then killing them on the basis of our negative perceptions through abortion, infanticide and other approaches. May God stop us as well.

McNair

The gift of time

As I mentioned, I just got back from a wonderful conference at the University of Aberdeen in Scotland, hosted by Dr. John Swinton, which featured Dr. Jean Vanier and Dr. Stanley Hauerwas.

One of the ideas which came through at the conference was the notion of being a "friend of time" or giving "the gift of time" to persons with cognitive disabilities in particular, but to persons with disabilities in general. I believe it was Vanier who spoke about how those who are well connected in society have little time while those who are not well connected have a great deal of time available to them. The question is how to bring these two groups together. One way is for the well connected to slow down. To become a friend of time rather than a slave to time. It requires serious life changes on their part to make this happen.

Coincidentally, as Kathi and I were hurrying from flight to flight on the way home, at one point I exited the plane behind a man who appeared to either have hemiplegia or who had had a stroke. His slow movement caused the line to slow down quite a bit. It struck me even in that situation, that I needed only to slow down a bit to his walking pace to still get where I wanted to go. I was literally physically slowed down, and for a moment experienced "exiting from an airplane" from his perspective in terms of the time it took.

The conference conversation also talked about taking the time to just have fun together with others. Vanier spoke of how most of the time he spends with his friends with cognitive disabilities is spent "fooling around" with them. I was encouraged by this from such a respected man as that is how I spend much of the time when I am with my friends with cognitive disabilities. He said there is also lots of celebrating of little things in life, taking time to celebrate those things.

For about 5 months of this year, I was spending one evening a week (for about an hour or so) at a group home on my way home from work. We would talk, eat some ice cream, have a catch with a baseball, or they would encourage me as I try to learn to play the guitar. They are always there, ostensibly waiting for me as I hurry from place to place. Being with them was a chance for me to slow down and try to be a friend of time with them. I the connected one, being with those who are less or not connected.

Luke 12:48 says, "every one to whom much is given, of him much will be required..." Much will be required of the well placed in society, not the least of which is their time. I am well placed, but even the well placed know that they have time if they make it. Please don't tell me you are too busy, because I am too busy too. But I have the ability, partly because I am well placed, to become a friend of time, and give of my time to those who would enjoy my company. It is a choice I have to make. It begins with me being realistic with myself, and calling myself into account for the choices I make.

McNair (fcbu)

The rectitude of doctrine vs. the rectitide of love

I had the pleasure of attending a conference last week at the University of Aberdeen in Scotland. The conference was hosted by Dr. John Swinton, and featured Dr. Stanley Hauerwas, a theologian/philosopher and Dr. Jean Vanier, writer and founder of the L'Arche communities.

I asked Dr. Vanier why he thought it was that the church has not been as responsive to persons with disabilities as L'Arche as endeavored to model. His response was that we as a church are focussed on "the rectitude of doctrine" when we should be focussed on "the rectitude of love." The rectitude of doctrine vs. the rectitude of love is something worth thinking about. No one is implying that doctrine is unimportant. Rather, doctrine can be dry and harsh. Love by comparison can be soft and accepting. In the case of persons with disabilities, we need love and doctrine to be as correct as possible.

May God open our eyes to the rectitude of love.
McNair

Assisting to gain independence

I have a friend experiencing a severe physical disability. He became disabled later in his life. He was already established with a job, family, etc. Most of those aspects of his life have been lost or significantly changed as a result of his disability. However, there are are positives and negatives in those changes he himself has reported to me.

As he has recovered somewhat from the original insult which caused his disabling condition, it has been interesting to see the interaction between him and his family. They have done just about everything for him for several years, and have mostly done those things joyfully. Interesting, however, that as he begins to get some of his abilities back (taking care of his own toileting needs, making various decisions about his life, etc.) there seems to be an almost resentment and resistance on the part of his family towards those changes. They are used to him being dependent upon them and as he gains in independence, they kind of resent it. I would have thought they might welcome the independence as it would free them up somewhat, and they could celebrate the growth he is showing.

It reminded me of the parent who struggles with their teen who chafes against the restrictions of the household. I have never really had experience in this area with my own grown up children. We have always gotten along famously. I have been blessed in that I can't even remember a real argument with either of them. But is it still somewhat disorienting for them to become as independent as they are. As a parent you live your life caring for the little ones you love so very dearly, and because you have done a good job in their upbringing, they become self-confident and independent, heading off to live their lives. But because independence is all so new to you as a parent(even though you see it coming) it does kind of disorient you.

It is my prayer that my friend's family will see my friend's growth as an occasion of celebration and joy, and will increasingly turn over the decisions of his life to him. I hope this not only for my friend, but also for the family.

McNair

The "embarrassment" of disability

In the book Defiant birth: Women who resist medical eugenics the author Melinda Tankard Reist takes on the notion of prenatal diagnosis leading to abortion through the stories of women who having received the diagnosis that the child they were carrying was determined to be disabled, but chose to have the child anyway. Of course she relates stories of those who were misdiagnosed, however, the thrust of the story is the experience of women who gave birth to children who were born with various disabilities. These disabilities include anencephaly (a disability which typically takes the life of the newborn within hours or days) and of course down syndrome. There are many amazing lessons to be gained. One, for instance relates to carrying a baby with anencephaly to term. Overwhelmingly, doctors would advocate for abortion of such children as they will die soon after birth anyway. Tankard Reist, however, says that if you knew your child would die in an hour or a day, would you choose to kill your child or would you enjoy the hour or day you had remaining with your child? Mothers spoke of their child living his entire life in their arms, of celebrating the 1 day birthday, or the trip home from the hospital. The also spoke of the impact for good the birth of the child had on their lives.

One story really touch me. Written by Elizabeth Schiltz about her experiences carrying, having prenatally diagnosed, giving birth and raising a child with down syndrome. She relates that when she took her baby out into the community there were actual comments made like "Why didn't you have prenatal diagnosis?" She said that many of the stares she received seemed to give the same message. There is a kind of embarrassment with goes with choosing to have a child with a disability, or simply having a child with a disability under any circumstances. Lets think this embarrassment through a bit.

Why would someone be embarrassed about anything in their lives? Perhaps I do something foolish and I don't want to be laughed at. Perhaps I do something wrong and I don't want to be found out. Other reasons could be thought of as well. The bottom line is that I am concerned about what those around me think about me, or my behavior, or my decisions. Teenagers in particular struggle with worries about the perceptions of their peers. As a parent I have often made a special effort with my kids to deliberately be goofy, or silly, or dress oddly in public so that when people look at me strange or if my children say, "People are looking at you" I can respond, "I could care less what people think of me. Am I doing anything wrong? (with my goofiness or whatever). If not I am not going to let them determine what I will do." They are on to me now, and know better, often saying themselves, "I don't care what people think about me." That is good, I think as it develops self confidence, but there is something even better that could happen. What if people would come up to me and say, "I like the way that you express your individuality." That would be an even more powerful witness to being a free spirit.

But that is what Christians, of all people, need to be doing. When we see a child with a disability, we should treat it like any other child we would meet. We should delight in her, play with him, tease with her. If I approach a family in my church or community who has just given birth to a child with down syndrome and say, "I am so sorry, I will pray for you." We don't bless that family, we embarass them when there is nothing to be embarrassed about. They have received the gift of a child that God has given them, often in the face of incredible pressure from the medical profession to abort the child, and our response is to embarass them for their heroic choice. Tankard Reist cites a statistic that 86% of babies prenatally diagnosed as having down syndrome are aborted by their parents. Do you, does the church add to the certainty that those children will be aborted by our embarrassment of parents, embarrassment of people with disability? As stated elsewhere in this blog, are we complicit in the abortion of babies with disabilities through our lack of caring or priority giving to the lives of persons with disabilties?

Those who would reject parents of persons with disabilities for choosing life or would reject people with disabilities themselves should be embarrassed, should be ashamed of themselves, not the other way around. We need to "not be conformed to the patterns of this world but be transformed by the renewing of our minds" ala Romans 12. What have you done in your life to contribute to 14% of families, moms and dads who chose to give life to a child with down syndrome?

McNair

Reflecting their surroundings

I was in a classroom this morning visiting a student teacher of 10 year old children with moderate to severe disabilities. Some of the children had autism, others cognitive disabilities. As I sat in the back of the room, there was suddenly a lot of screaming from the next room. Ultimately a student was placed in the little office which connected the two rooms. For the next 10 minutes you would hear a calm woman's voice followed with screams of "Shut up b**ch." Over and over again.

In another setting of children with severe disabilities of kindergarten age, there was a boy who didn't communicate other than to say "Hi" on occasion. However, as he moved through his day, he constantly repeated, "F***ing sh*t." That was his complete language repertiore. Knowing the number of times something has to be repeated in order to find its way into such a student's language repertiore, I couldn't help but wonder about the environment these students were living in.

Maybe people around them thought them cute in their nonsensical swearing. However, that kind of language is not thought of as funny in many, maybe most social settings. People who talk that way will never be able to have any job in which they work with customers. You need only tell your boss "Shut up b**ch" once before you will be fired (in case you didn't know).

We, however, in the church need have patience and acceptance for people who use such language while also trying to teach those individuals that such language is not appropriate. However, we must take the position that the swearing cannot be a reason for exclusion from a church setting.

I used to work with kids with serious emotional disturbance. I have been called many memorable things as has my mother, my wife, and anyone else they thought might cause me to get angry. In every case, I have had to repeat to myself, "This is the disability talking. This is the disability talking." Had I rejected them, I would have supported what they were trying to prove to me. That is, basically that they are worthless and that I would ultimately reject them. It is tough when you faced with such a barrage, however, in these cases it truly is the disability speaking.

In the case of the severely disabled children above, it isn't really the disability talking as in the second case, he was doing little more than making sounds that he had heard and had discovered would get a reaction positively or negatively from his environment. In the first case, he learned that that is how you interact with your environment by examples that had been provided to him. His particular choice of language he probably also discovered got the maximum reaction from his environment.

Is the church prepared to include people such as these or are we only willing to take those who act in a particular socially circumscribed manner? If these types of children and adults are in the congregation, how do we prepare congregational members for the things they might say or do? I think it begins by having those people present to begin the conversation. I think people have not been forced to come to grips with their faith in terms of having demands made on them in areas of acceptance and understanding of others. The church environment has in many ways become too sterile.

I need to begin with acceptance and then move to change. I don't begin with change and then move to acceptance.

McNair
(fcbu)

200 Posts

Today's entry is the 200th post to this weblog. So what have I learned over the past 2+ years?

I have learned that thare are many people across the country who resonate with the various quotes from authors I have provided here.
I have learned that there are too many people who are frustrated with the relationship they and their family member with disability have with their church.
I have learned that there are churches who do not have disability minstry on their radar screen.
I have learned that there are churches who not only do not have disability minstry on their radar screen they refuse on many levels to add it to their radar screens.
I have learned that what is really needed is quite simple, largely being about relationships.
I have learned that I have a lot more to learn.

As I have been writing a book I am hoping to have published that will probably also have the title disabled Christianity, perhaps the greatest benefit to me in writing is that I am pulling together the various topics of the last 2 years. I ask for your prayers as I move forward on that project.

This summer I have been very busy with a variety of project, however, I hope to get back to more regular postings shortly.

Thank you for your readership!
McNair

Its about relationships

Kathi and I had a great time yesterday. We had lunch with one of the pastors and his wife from our church, and our PAID ministry support person and her husband. It was great time. The pastor, Kurt, asked me where I would like to see our church in 15 years. As I thought through that question, and listened to the discussion that ensued, I was once again impressed with the fact that what are needed are not programs but relationships. It is not about building programs that include people, it is breaking down the barriers that exclude people from existing programs. Ben (the husband of our ministry support person, Rachel) talked about how he wished that people with disabilities were just known by others in the church, to the point that needs would be met on a simple intepersonal level.

We all talked about the distancing that can come from programatic approaches to helping persons with disabilities. That whole question is something that I have thought about a great deal and I have come to the conclusion that we need both. We need to be people who introduce those with disabilities to those who haven't experienced them yet in order to break down the "otherness" feeling that many nondisabled persons have about those who are experiencing disability. That is all about relationships and experience and personal interactions. Those types of engagement will lead to experiential knowledge which will break down many of the barriers which have been constructed. Why do I not feel uncomfortable with people who act atypically? Probably more than any other reason is because I have been around many people over my lifetime who have been atypical actors. I have know people whose behaviors range from those with very minor social skill deficits where you just notice a very subtle difference, to those who smear feces or publicly masterbate, or violently punch themselves in the face. Through experience, I have learned to redirect them, or try to give them alternatives to their current behavior when asked to do so. But largely, I have learned to accept them. Sure, I get mad at people and enjoy the company of some over others. But the opportunities I have been provided through my experience have allowed me to see the person behind the atypical behaviors. By seeing the person, the otherness starts to fade. But these changes that have been wrought in my perspective came over time through personal interactions.

There is still a place for programs that focus on inclusiveness of persons with say, cognitive disabilities. Places where they can have the scriptures explained to them in a clear but not demeaning manner. Where they are treated as adults, but given information at a slower pace. But I think I would even sacrafice those types of settings (as useful as they are in building spiritual knowledge and understanding in persons with cognitive challenges) for simple ongoing interactions with other people. Many of the lessons we teach in our Light and Power class, for example, could be facilitated by friends explaining the sermon to friends. Additionally, as people experience more severe forms of mental retardation, their church involvement does not revolve around some sort of spiritual formation. It relates to them coming to a place where they are loved and accepted. Where they feel a part of something while they have a donut and coffee (see Fowler's "Stages of Faith").

So I think where I would like to see my church in say 15 years, is a place where there are many relationships between people independent of their differences. Where differences perhaps cause you to do a little planning (assisting a person who uses a wheelchair, for example) but doesn't in any way stifle relationships. Yes, there are structural changes which need to occur in the church, but rather than just prescribe structural changes from the outside, people will desire to see changes when they see their friend Sally excluded from opportunities for service or whatever within the church. Their righteous indignation would fuel the desire open things up. But as Kurt (the pastor at our lunch) said, it has to get into the DNA of the church. DNA is very difficult to change.

McNair

Religious liberty in group homes

I am in the process of researching issues related to the religious liberty of persons with cognitive disabilities who are living in group homes in the community. I would appreciate any input that those of you who visit this blog might be able to provide. Specifically, I am looking for
-literature/references
-other resources
-stories of your experiences

You can provide any input via this weblog, or you can email me at mail@jeffmcnair.com

Thank you for your assistance.
McNair

Choosing disability

I met a woman yesterday for whom I have a lot of respect. She is a friend of my Mother-in-law whom I met at a party. She related the following story.

She and her husband had two young boys, once 10 and one 12. She had had some experience volunteering to work with at risk children, but thought that she would like to do more. She decided to be a foster parent for a couple of the children. However, there wasn't a need at the particular time that she was interested for the type of children she had been working with. Undeterred, she decided to adopt two children with developmental disabilities. One had down syndrome, and the other some very rare syndrome that she related had hardly been described at the time. It ispowerful to note that she had never known a person with down syndrome before. The two girls lived with her family for about 11 years. Ultimately, one of the girl's father moved out of state, and the regulations stated that a family member needed to live in state for a child to remain in the foster care situation. The other girl moved out of the home to a group home. Apparently and sadly, one of the conditions of her foster care arrangement was that she could not contact them once they left her. It has been nearly 20 years now and she hasn't heard from either of them. She suspects one of the girls probably has died because she had severe medical problems at the time she was their parent.

Upon hearing her story, my only response was, "God bless you for taking those girls into your home!" She related that she had received tremendous benefits to her family as a result of having the girls. Effects, positive effects, on her and her husband as well as on her two boys were lifelong.

McNair

Bruce and Cam (aka Martha and Mary)

I had the privilege of presenting to a group of Christian medical students at a meeting on the University of Redlands (Ca) campus last night. What a great group of future doctors they were. Our program was comprised of myself talking about impairment vs. disability, Kathi (my wife) intereviewing 3 adult friends with cognitive disabilities, Alice a friend and medical student and her son Josh sharing about their experiences with the medical world and another friend and university colleague, Bruce sharing about his experience as a parent of a child with a disability.

I got a bit choked up at one point, when Joyce, one of my friends experiencing disability shouted to me, "Spit it out" which shook me right out of it! Kathi asked great questions and Alice provided wonderful pointers, mostly about treating people with even the most severe disabilities as people, with respect. This seems so obvious, however, if you have any experience with persons with severe cognitive disabilities, you know that it is not at all obvious.

In the midst of the evening, Bruce shared the story of how he was keeping an eye on his son, Cam a preteen with autism while he was doing yard work. As he was working, trying not to be distracted by his son, an older gentleman walked on the sidewalk past them. His son ran up and positioned himself in front of the older man and began a conversation. "What do you have in the McDonalds bag you are carrying" it started after name introductions. The man stood there and kindly interacted with the boy for several minutes. Finally the man said it was time for him to leave. As Bruce stood there, he kind of shook his head to himself, wishing that his son would leave the man alone as he got back to his pruning. The man began to walk away when his son called out to him again. "George!" he said. "Do you know Jesus as your savior?" the autistic boy called out. Bruce said he was moved and really convicted. He was the Martha to his son's Mary (to use the Biblical story). At that moment Bruce said that he learned a great deal about himself in relation to his son, and also about his son.

It was a wonderful evening. I was very impressed by the students and the program (put on by Campus Crusade).

(fcbu)
McNair

Biblical language

Dr. Stanley Hauerwas writes of how groups define themselves by their narrative. The Bible is obviously the narrative for Christians and in the Bible, one can hardly read the Gospels in particular without bumping into people with disabilities. In many occasions, Jesus heals them. Dr. Bob Pietsch has written how the Jewish leaders needed only have a man with a “withered hand” in a room of people to “trip up” Jesus. That is, they knew He would see the man and then that He would heal him. Jesus on another occasion sends out his disciples, and later the 70, with the power to heal people with all types of infirmities (Luke 9). When in prison, John is told that the proof that Jesus is the Messiah is that the sick and disabled are healed (Luke 7:23).

Jesus and other biblical writers change how we think about things. They redefine words as illustrated by the following.

Foolish – one who hears words but doesn’t put them into practice (Matthew 7:26)
Good – one who bears fruit (Matthew 7:17)
Servant – we are all to be servants of all (Mark 9:35)
Wisdom – the fear of the Lord (Psalm 111:10)
Strength – is Christ (1 Corinthians 1:30)
Poor – poor in the eyes of the world but rich in faith (James 5)
Humble – those who are lifted up (Luke 1:52)

We are also instructed to, give to the needy (Matthew 6:1-4), now worry about our lives (Matthew 6:25), and seek first the kingdom and righteousness (Matthew 6:33).

Each of the above establish criteria for followers that nearly all may participate in. These radical definitions provide access for the inclusion of nearly all people. In an effort to include all, Paul goes through a list of persons who would typically be excluded, ultimately going so far as to state that God chooses, “the things that are not” (1 Corinthians 1:26-31). Interestingly, this perspective and the above definitions benefit persons with disabilities.

In spite of this language, this narrative, such perspective changes are not reflected in many churches. These environments can have an effect positively or negatively on God’s ability to minister within their midst. For example, in Matthew 13:58, it states that Jesus was unable to do miracles among them due to their lack of faith. While on the contrary, when the paralytic is lowered through the roof for Jesus to heal in Luke 5:17, the Bible says that when Jesus saw “their” faith, including the faith of those who lowered the man, he replied “Friend, your sins are forgiven.”

McNair

Religious liberty

On the Fourth of July, it makes sense to talk about liberty. In this case religious liberty. Let me share a brief experience and then tell you what I have been doing to better understand the situation and its potential ramifications.

There were about 8 residents of two group homes for adults with cognitive disabities who were attending my church. Specifically there were 3 women and 5 men along with a group home worker who were attending. We were enjoying getting to know each other through the activities of the church on Sunday mornings. Somewhat suddenly, they stopped attending the church. After making several attempts to contact the group home which received no response, we finally got into contact with the woman who had been bringing the adults to church. She related that she had been fired for very non serious infractions (according to her telling) and that the folks were no longer permitted to go to church. We got the impression that they were no longer permitted to attend because of the nonreligious proclivities of the group home owner.

Since then, I have been in contact with a variety of people/agencies to get an understanding of the religious rights of persons with cognitive disabilities living in group homes. Several experts in religious/disability although helpful, didn't have a lot to offer in terms of resources. The Dept. of Justice wrote me a letter which implied that rights might be curtailed depending upon who funds the group home. A legal aid group indicated that parents or conservators might restrict the religious liberty of these adults. In California, religious liberty is guaranteed under Title 17 of the California code of regulations which states, (4) A right to religious freedom and practice, including the right to attend services or to refuse attendance, to participate in worship or not to participate in worship.
In speaking with a client advocacy group, I was informed that no one can refuse religious liberty whether conservator, parent, etc.

The critical factor then becomes access. How does one determine the choice of a cognitively disabled adult living in a group home? Group home providers may restrict access on the basis of their own attitudes toward religious activity. The rights of others living in the home might also come into play. I am confident that those who are funded by the state are very gun shy when it comes to anything related to church and state, and have perhaps overly restricted access in some cases. I continue to try to do research in this area.

There is case law related to group home owners attempting to proselytize those living in the homes which says that such pressure is inappropriate. I would suspect it is illegal to proselytize for or against religious faith. One must wonder, however, about the procedures necessary to provide choice to someone in this area.

As discussed elsewhere in this blog and on my website (see, A Discussion of Networks Supporting Adults with Disabilities in the Community on my website) I am confident that the local church is the answer to community integration of persons with cognitive disabilities and will one day prove to be so. However, an important step in the mean time is access to persons living in group homes, and assisting adults with cognitive disabilities to express choice in this area.

I would appreciate any insight, ideas, resouces readers of this blog may have come across relative to this issue. Please send them along to me at mail@jeffmcnair.com
Thanks,

McNair

Swearing at the people

About a year ago, I was just coming out of a Mexican restaurant with my family when I heard this guy standing by the restaurant's dumpster, swearing loudly at people passing by. His language was such that you could tell that he was someone with mental illness. I went over to him and asked him gently, "What's the matter?" Through a lot of jibberish sprinkled with references to me as "Officer" he related that he could really use a pack of cigarettes. I told him to wait there a minute as I went across the parking lot to a convenience store where I bought the cigarettes and came back to him with them. He was very grateful, saying over and over, "Thank you officer!" I left him by saying, "Please don't swear at the people. Please say after me, 'I won't swear at the people.'" After several more "Thank you officer" I left him sadly.

I have often thought about that interaction. The fact that he was standing by the dumpster like so much human garbage. That he called me "Officer" perhaps because most of the people he interacted with in the community were police officers responding to a complaint. The fact that he interacted with people by swearing at them, perhaps out of frustration with people. Interestingly, he placed himself where there would be people as he obviously wanted some human contact if only to be told to stop swearing or to get the cigarettes he ultimately got for me. What a difficult life he appeared to be living. And as I always ask myself in these types of situations, I wondered "Where is the church?"

Why did I not feel uncomfortable with the man when many others might? True I am a large man, but I think my lack of fear is more related to the fact that I have spoken to many people like that man before. I have experience with people like him. I definately did not get that experience at church which is a problem. I mean Jesus went out of his way to talk to people like that man (see the Gereseen demoniac story). But I don't see people like him at my church, or pretty much any church for that matter. From a strictly humanistic perspective, imagine the good it would do for a man like the one I met to find himself in a church where people loved him and talked to him and listened to him.

One of my favorite people in my life was my wife's grandfather, Russel Searer. He was a kind gentle man who loved God deeply,and had a great wit. Toward the end of his life, however, he developed alzheimer's disease. I think it would embarass his wife that I would sit and talk with him whenever we were together. He would repeat things over and over and over and over. He would talk about nonsensical things. I enjoyed being with him because I knew I was learning about people like him; I had a professional interest. But I also knew that I was in a very small way contributing to his self esteem, his feeling that someone loved and cared for him. That was very important to me. That is the kind of ministry that the church should be about. If I am present with people like Russel, I protect him from those who would do evil to him. By spending my "valuable time" I say that I think he has value to me and ultimately value as a human being. I choose to be with him. I want to be with him.

It seems the church doesn't want to be with people with mental illness unless a person's mental illness is under control to the point that it is hardly recognizable. It doesn't want to be with mentally retarded people, and I am not sure why. If we spent time with them, they wouldn't be the crazy person outside of Walgreens, they would be a person who has been rejected by society but who God says he loves as much as he loves you or me.

When will we as individuals and the church reflect this aspect of the character of God?

McNair

Disability awareness Sunday

This past Sunday, my church held what was called "Disability awareness Sunday" which largely highlighted two ministries of our church. The one is called the Light and Power Company, with is a group that includes adults with developmental disabilities, and the other is called King's Kids which helps to integrate children with various disabilities into the regular programs of the church.

The service started with worship/music. Four individuals with cognitive disabilities assisted in leading the singing. Our worship director had provided them with cds with the songs they would be singing, and they all apeared to have listened to them as they were singing along with the band and having a great time. Next up was a video I did with my video expert extrodinaire and son, Josh (http://punkvideoguys.org) which was interviews and some video of people just living their lives. I hope to have a link to the video from this website eventually. After the video was an interview with three people from our group. I always like th ask the question in front of a group, "Do you have a disability?" as the answers really open people's eyes. Typically the response is "I don't know." I then comment that people without disabilities often think that disability is the defining characteristice of a a person with disability's life when they may not even recognize that they have a disability.
After the interview, there was more singing and then a faith story shared by the parents of a great young guy who attends our church who also has cerebral palsy. They told of their life in Virginia at the birth of their son. Basically, they were pretty much rejected by their church and after much searching at the churches in the city where they lived in Virginia, they found that the churches were basically discriminatory against children with disabilities. Ultimately, through the wife's mother, they came to California, specifically because of our church and it's desire to include all the people in God's family. Our pastor then did a great job going through sections of Romans 15. It was interesting and he made some great connections with disability ministry.

The highlight for me, however, was the second service of the morning (we have 3 every Sunday morning). During the second service there must have been 35-40 people with mental retardation in attendance in an audience of perhaps 600. There was something about that gathering which gave you the feeling that that was the way church was supposed to be. Some folks were a little noisy, not bad, and perhaps there was a little more activity than usual, but the fact that so many were there was cool. There were actually about 10 people with severe mental retardation in attendance. I wondered to one of the pastors whether that had ever happened before at our church (I am sure it hadn't). It was great.

I also was aware of how the presence of all the folks with disabilities kinda softened people, from the pastors to those in the congregation. The pastor had several moments where he was overcome by emotion during the services. Congregational members responded to the the over the top desire to shake hands that some people evidence and were patient with noise and atypical church behavior. It was awesome. The church would be changed if that type of attencance occurred every week.

McNair

Jean Vanier quote

The following is from the RELIGION & ETHICS NEWSWEEKLY regarding an interview to be on a future PBS program about Jean Vanier. Pay particular attention to the quote at the end.

Jean Vanier is the founder of L'Arche, an international organization that creates communities for people with developmental disabilities -- people who were in institutions, on the streets, or in families who couldn't care for them or didn't want them. The son of a French-Canadian diplomat, Vanier served in the British Royal Navy during World War II, then he taught philosophy in France.

While never marrying, he considered the priesthood. But in 1964, he found his calling, opening the first L'Arche home in a small village south of Paris. Judy Valente visits L'Arche in Chicago and talks with Vanier about how the members of this establishment have transformed Vanier by allowing him into their world and watching their self-esteem grow as they give back
the love that they have received.

Vanier says, "My life is to live with them -- to be with those who are fragile, vulnerable and weak. I'm not sure that we can really understand the message of Jesus if we haven't listened to the weak...we can love people who have been pushed aside, humiliated, seen as having no value. And then we see that they are changed. And at the same time, we discover that we too are broken, that we have our handicaps. And our handicaps are around about elitism, about power, around feeling that value is just to have power."

To truly be able to take the perspective that Vanier describes, I must work on developing a Romans 12:2 kind of perspective. How could I learn to live the message of Jesus unless I seek to, "be not conformed to this age but be transformed by the renewing of your mind, in order to prove by you what is the good and pleasing and perfect will of God."

We cannot really understand the message of Jesus if we haven't listened to the weak, those who are seen as having no value. Useless eaters as the Nazi's called them. but I am steeped in elitism and power and the feeling that value is to have power. I am entangled and ensnared in those values that I have been socialized into believing. I, we need to ask God for the transforming of our minds in order to reflect Vainer's vision of being like Jesus.

McNair
(fcbu)

Inclusion vs. nonexclusion

I had the pleasure of having lunch with a friend of mine, Arthur Seale. In the midst of our discussion, Arthur made the comment something to the effect that rather than working on inclusion, we should be working on preventing exclusion. He and I then went off on a variety of ideas about how in a variety of places (the church in particular in our discussion) develops places of inclusion instead of preventing exclusion. So for example, we say, "Disabled person, you can be participate by being involved in this program created for you, or you can participate in this program where the people will not exclude you." Such statements are a far cry from inviting someone to full participation in the church. Imagine if you were joining a church and the places in which you might participate were described in such a circumscribed manner.

"You can be a member of this group because it was designed for people with your personal characteristics. This is the place for disabled people. However, you cannot be involved in this other group because the people either
1) will not accept you because of their prejudiced notion of who you are,
2) are not willing to alter the way they do things, their structures, in order to accept you,
3) are not willing to do anything extra to facilitate your participation,
4) are uncomfortable with your personal hygiene, your appearance, your manner of dress, etc."

Now obviously we wouldn't expect men to be members of the women's group or vice versa. Nor would we expect children to attend the high school group.

Our efforts should be at carefully looking at the structures of our church and remove those things which would exclude people who should be a part of whatever group they would typically be a part of. So I would expect all of the men with cognitive disabilities to be a part of the church's men's group. There is no reason for them not to be involved. And if we truly do believe that we are all equal in God's sight, we should be making the same efforts to involve them that we would for men who are not experiencing disability. It is not like they are damaged goods or something, so we should not treat them as if they are...and we do treat them like they are.

I was reading the John account of the last supper. In the midst of arguing over who was the greatest (something that I have never heard adults with cognitive disabilities do, but have heard from state university professors) Jesus strips to his underwear and washes his disciples feet. Upon finishing, he says that if your Master would do that for you, what should you do for each other? That is the interesting thing about true service, it is fully inclusive and not at all exclusive. I don't need to set up a separate room for washing the feet of the disabled people because their presence bothers those currently not experiencing disability. If we are all trying to be modeling the behavior of our master, we would be vigilant to look for ways in which those who might be served are getting access to being served, and/or serving them ourselves. The last thing we would do would be to construct obstacles to people finding their way to the Lord, and our having the opportunity to serve. I think we have gotten to the point that we think service is about being served, not about serving. If the capital C church truly believed in service, there would be more people needing service there. The presence of persons with disabilities would be one great evidence that that particular church was one that fought exclusion and worked at serving.

McNair

Montreal summit 2006

I was very excited to attend the recent Montreal summit, and continue to reflect on my first experience at a truly international conference. It was delightful in very many ways.

I recognize that I see the world through glasses colored by my perception of what the church might be in supporting people who are disenfranchised in various ways, particularly persons with disabilities, however, I came away from the conference amazed at the various presentations about community integration and inclusiveness which were friendly toward the role of religious groups. Several presentations specifically mentioned the benefits of religious group involvement (including my own). Others spoke about linking persons with disabilties to existing community networks as means toward community integration. Oftentimes I felt as if the next words out of a presenter's mouth would be "you should introduce your friends with disabilities to the benefits of church membership."

In my own presentation, I spoke of how supported employment has become the obvious answer to the question of how to facilitate employment for persons with cognitive and other disabilities. I then went on to say that I believe that church involvement will ultimately be just as obvious a solution to community integration of persons with cognitive and other disabilities. I honestly do believe that. And it will be a great boon for the church! The community will see the church working the works and will be drawn to it. It is tough to argue with people who are reaching out to those that society has overlooked. People who would typically never set foot in a church will come because they will see the church as a place where their child with disabiltiy is wanted, is accepted and integrated. The witness of a church which goes into the community to serve those who have been ignored in the past would be appealing and irrestible. But not just to serve them, but to enter into a relationship with them. Who desires to be with them. Who wants to be in their presence and wants them to be a part of the group: membership, not just service or charity. Funny how obedience does that. The community is ready, persons experiencing disabilities are ready ...

McNair
(fcbu)

The why of disability

In the last week, I have had 2 separate discussions with friends about the question of why people have disabilities (particularly congenital disabilities). The one setting was at an international conference in Montreal. There were professors from Belgium, Netherlands, and several important people from the disability world in the United States in that group. The second group was with some close friends of mine with whom I meet regularly, one a psychiatrist, the other a professor and philosopher.

In the first setting I asked whether they felt disability was the result of the Fall, or was just a part of the natural range of human diversity, or something other that hadn't occurred to me. I was chided for even asking the question in the first place. "Who are we to questions God" was the response from one member of the group. I feel like I can ask questions of God about anything. Particularly because my question is one of trying to find understanding, not trying to question God's wisdom (although I would ask those questions as well if I had them). God is big enough to take our questions and either answer them or guide us through the process of further trust in him without a specific response. I left that discussion thinking that surely these people had thought about this question even though the weren't very interested in discussing the possibilties.

In the second group, the answer given to me was more of a "what difference does it make" kind of response. Now as far as I am concerned, it makes no difference in my day to day interactions with people with disabilities. However, there are many spurious notions of the why of disability floating around out there and there are people who ask the question for a wide variety of reasons. If I say that disability is not the result of the parent's or the person with disabilities' sin (see John 9) to use a reason sometimes provided in Christian circles then I must look to other reasons. Is the reason the syrupy sentimentality about specialness? Are people with disabilities actually angels who are unaware? Are they there to teach us something, i.e. living object lessons? If I am going to refute these ideas, do I simply say "I don't know what the reason is but it not what you say it is?" I can test some ideas against the truth of scripture (eg. the result of sin notion) which can support or refute an idea.

One of my friends in the second group said that it is not the event in itself that is important but the fact that God is with us through the event. He cited stories about the twin towers incident on 9-11 and how God's presence was made real to the fire fighters through prayer and encouragement when they took brief breaks from their heroic efforts. I heartily agree that God is with us through all the circumstances of our lives. That is not an issue for me.

I guess the reason why this question is important to me is that if I am to say that your reason for the why of disability is not biblically sound, I need to also say this is what the biblically sound reason is. I also do recognize that we are to trust in the Lord and not lean on our own understanding (Proverbs 3:5). If we do that, God will indeed be with us and as the verse says will make our paths straight.

So this is not a point of faith for me; my faith is not tied up in whether I get an answer to this question. But it is a point of understanding. An understanding largely of who God is through the work of his creation.

McNair

Community Integration

This week I am headed up to Montreal for a conference on social inclusion of persons with disabilities, particularly those experiencing mental retardation. As I plan to attend the conference I am increasingly more confident about the role the Church has to play in the community integration of persons with disabilities and their families. It is pretty easy to make the case for Christian churches (and most other religious groups for that matter) as the place where disenfranchised, devalued individuals can find integration into the community.

If you think about the Church, it exists to worship and serve God, to do what is right as well as it can understand it, and to support its membership. We have also received a call to go out into the world and make disciples of all nations, so there is an outward focus as well. In each of these areas, the inclusion of persons with disabilties makes perfect sense. They worship God, they try to do what is right, and are quick to help others if given the opportunity. I have found that they also do what they can to speak to others about God, or at least have a positive witness. Through simple efforts on the part of the Church, community integration might also be facilitated.

The secular human service world is pretty much desperate to find ways in which persons with mental retardation can be integrated into the community. All the while, there is the ubiquitous presence of churches. Those in human services, particularly those in academia who prepare human service workers are often unchurched or have a negative perspective towards all things religious. On the other side, the Church is blind to persons with disabilities, quite often, and is blind toward things related to disability. Over the years, I have been trying to help the secular see the potential of things religious and the church to see the potential in things "disabled." God willing, one day, the two will come together and the outcome will be beneficial for all three. The secular will see the benefit of integration through the church, the church will see the benefit of being obedient to God in including persons with disability in the church and the persons experiencing disability will have the benefit of knowing what it is to be integrated into the community rather than being ignored or discriminated against. As I have said elsewhere, one day the involvement of persons with mental retardation in churches, their referral to a church by a secular agent of the state may become as obvious as taking an aspirin for a headache.

McNair